Hello! My name is Addie

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Myotonia Dystrophy

Struggling to live

Addie Lee Alexander

Born Kay Ann Joncas December 18, 1948

MDA Clinic Questions June 2001: 1) Heart: is a-fib a concern for getting blood to the heart? will high v-rates pose a threat? 2) Is the high heart rate related to the periods of dysphasia, high glucose, noodle knees happening together. Two or three day episodes, followed for several days day with dizziness when sitting up from bed, and by other "angina pectoris" symptoms. Is this related to heart? Is it treatable, like with blood pressure medication? 3) Is the uncontrolled arm movement at her respiratory rate an angina symptom? She has had them whenever she has complained about anxiety and pain below her throat before, but it's always been limited to the transition from wake to sleep or leep to wakefulness. Her father had shoulder shrugs and "cycling" when wakening, too, which is what Addie had until she had her collapse on the airplane coming home from her mom's funeral. 4) Daytime sleep, or DEEP sleep: appearing to awake, but losing a whole day. Is there a medication? 5) Is the blindness correctable to any extent? Is it MMD cataracts, maybe needing new lenses? Can medication help, maybe BP medication? 6) Is thinning hair at temples progressive? It's where she had seborrhea crusting, until this hospitalization. She also had the crusting in patches throughout her scalp, which was allowed to build up during three months of hospitalization - no hair washing at all until she got her hair cut prior to her pacemaker surgery. Is this related to her leg hair disappearing in the mid-80s? 7) Weight loss has slowed now. Lost 30 pounds in first month at Holy Cross, another 30 pounds through the beginning or this month, and only a couple of pounds this month. Her strength does not appear to be diminishing since coming to the Nursing Center. The "loose skin" has been firming up the past several weeks. She's eating better by mouth now than she was for the last year before entering the hospital. 8) Hardness to touch of "tummy skirt" and of breasts feels hot to her, but not to touch. She asks for a fan when the fatty tissue is hard. Healing of any skin sore is lengthy when this is active, and her hysterectomy scar became infected last time her tummy got this way.